What happens to my data?
For full details about how we manage patient data and anonymity please see here.
What happens to my blood sample?
Once your blood sample has been collected it is sent to our laboratory for processing. The scientists separate your DNA from the other components in your blood, such as sera and plasma, which can be used for measuring biomarkers (indicators of cellular function and health status). Your DNA is passed to the Wellcome Trust Sanger Institute for whole genome sequencing and the information that is seen in your genes can then be used to better understand the causes and disease processes involved in Crohn’s disease and ulcerative colitis. The information in your DNA, alongside information you give us in questionnaires, will also be used to decide whether you are suitable for invitation to the research that we support.
Can I take part if my hospital isn’t on the list of open sites?
We can only recruit patients from NHS hospitals that are working with the IBD BioResource. This is because we need your clinician to provide information about your illness and we would not be able to have that information if your hospital is not set up with us. Please do check here to see if your hospital will be recruiting to the IBD BioResource soon.
Can I take part if I no longer attend an NHS hospital clinic for my care?
We are only recruiting patients through NHS hospital clinics. Therefore, at the moment if you do not attend a clinic, or if you attend a private hospital for your care, you will not be able to join the panel.
Can my child take part?
The paediatric IBD BioResource (PIBD) opened in spring 2022, meaning children aged 0–15 can now participate in the study. Please see our PIBD page for more information.
Can I take part if I have microscopic colitis?
No, we are not recruiting patients with microscopic colitis.
Can I take part if I have IBS?
No, we are only recruiting patients who have a diagnosis of Crohn’s disease or ulcerative colitis.
Can I just take part in the IBD BioResource and not the NIHR BioResource?
No, you will consent to take part in both, and it will not be possible to sign up to one panel and not the other.
What do I do if I no longer want to take part in the IBD BioResource/my child no longer wants to take part in the PIBD BioResource?
Leaving the IBD BioResource is very straightforward – you do not need to give a reason for your decision, and withdrawing will not affect the quality of healthcare that you/your child receives.
Please contact us on ibd@bioresource.nihr.ac.uk (adult cohort) or paediatricibd@ndm.ox.ac.uk (paediatric cohort) with ‘Withdraw from BioResource’ in the subject line. Include your/your child’s name, address and date of birth in the email, and we will initiate the withdrawal process. Alternatively, you may inform a member of the research team where you were recruited to the IBD BioResource that you would like to withdraw, and they will let us know for you.
You can withdraw from the IBD BioResource at any time. Once you have withdrawn, we will not contact you again for any BioResource-related studies.
Choosing what happens to your samples and data
If you choose to withdraw, we will ask if you would like us to destroy your samples. You will also be asked if the BioResource should dispose of your data, to prevent its continued use; or continue to acquire it and use it, providing we do not bother you.
- Samples
If you would like to have your samples destroyed, please note that we will destroy only those samples that we store centrally (at our national repository). Samples that have already been prepared for testing or given to researchers will not be destroyed.
Samples sent for testing will not be recalled for destruction, but no new data will be added to our research database. Please note that samples are not labelled with personal identifiable information.
- Data
If you choose to withdraw, we will retain only a skeleton record of your information, along with your consent form. We are required to keep this personal information for audit purposes. It will be visible to only the very few individuals who manage this function.
Any data that has been archived will not be destroyed: however, this data is not linked to your personal identifiable information. Once you have withdrawn and we are aware of your samples and data wishes, we will not contact you again.
If you do not let us know your choice, we will retain your samples and data for future use, but we will not contact you again.
